REVIEW

CURRENT
OPINION Occupational therapy interventions for
breathlessness at the end of life
Deidre D. Morgan a and Kahren M. White b

Purpose of review
This review aims to define and explore the contribution of occupational therapy in end-of-life care, with a
particular focus on breathlessness. It examines occupational therapy interventions for the management of
breathlessness and makes recommendations for future research.
Recent findings
An emerging body of research demonstrates people with advanced disease continue to strive for active
participation in everyday activities in the face of debilitating symptoms such as breathlessness. It is through
active participation that people adjust to bodily decline. When specific everyday activities are targeted for
intervention, implantation of strategies to manage breathlessness within the context of these activities has
been found to optimize function and well being for those with chronic obstructive pulmonary disease.
Evidence examining the efficacy of energy conservation and relaxation is limited and requires more robust
examination.
Summary
Symptoms such as dyspnoea need to be considered within the contexts in which they exist – that is, the
bodily experience of breathlessness and its impact on everyday activities or occupations. The clinical and
theoretical focus of occupational therapy supports the enablement of continued participation in valued and
essential activities and offers a unique focal point for research. Emerging research demonstrates the
importance of translating the benefits of effective symptom management into everyday activities and
informs a future research agenda.
Keywords
breathlessness, function, interventions, occupation, palliative care

INTRODUCTION health or illness. The purpose of this study is to

Deliberating about the merits of scientific endeav-
our, American philosopher and naturalist, Thor-
eau [1] wrote, ‘The question is not what you
look at – but how you look and whether you
see’ (p. 24). What do we see when we look at a
person with a diagnosis of advanced disease and
debilitating breathlessness? Is our primary focus
on symptom alleviation using pharmacological
and nonpharmacological interventions or do we
consider what palliation enables, which includes
increased or better maintenance of participa-
tion in valued everyday activities? Both symptom
management and what it enables (increased
participation and less anxiety) are vital. Indeed,
participation cannot occur without effective
symptom management.
The primary focus of occupational therapy is
on enabling participation in everyday activities to
the best of an individual’s ability, irrespective of
introduce occupational therapy at the end of life
and examine occupational therapy interventions as
they relate to breathlessness. The importance of
optimizing active living in the face of debilitat-
ing symptoms such as breathlessness and ways in
which occupational therapy facilitates this are
examined and recommendations for future research
are presented. Excerpts from an interview with
Glenys, a 72-year-old widow with small-cell lung
a
Occupational Therapy Service, Peninsula Health, Frankston, Victoria
and bDepartment of Occupational Therapy, Prince of Wales Hospital,
Randwick, New South Wales, Australia
Correspondence to Deidre D. Morgan, Senior Occupational Therapist,
Palliative Care Unit, Peninsula Health, 125 Golf Links Road, Frankston,
VIC, 3199, Australia. Tel: +61 3 9784 8628; fax: +61 3 9784 8623;
e-mail: deidremorgan@phcn.vic.gov.au
Curr Opin Support Palliat Care 2012, 6:138–143
DOI:10.1097/SPC.0b013e3283537d0e

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KEY POINTS
 Management of breathlessness needs to be considered
in the light of what it enables – ongoing participation
in active living.
 Occupational therapy provides an empirically
developed theoretical framework against which to
evaluate interventions for breathlessness and supports a
clinical focus which aims to optimize participation in
valued and essential everyday activities or occupations.
 An emerging body of research supports the
implementation of strategies to manage breathlessness
within the context of relevant functional activity, not
simply through didactic training. Further research is
needed to identify which specific components of these
interventions will achieve the best outcomes for
optimizing function and in which settings.
cancer, illustrate the functional imperative under-
lying management of breathlessness [2].
OCCUPATIONAL THERAPY DEFINED
But I’d just like to keep on doing what I did do, it
doesn’t matter if I can’t do it as fast or as much. [2]
The fundamental tenets of occupational therapy
emphasize the enablement of optimal participation
in everyday activities or occupations [3,4]. These
tenets support, and are consistent with, the philos-
ophy and practice of palliative care which aims to
optimize living in the face of dying. The term occu-
pation relates to how a person occupies their time
and, from an occupational therapy perspective, is
viewed as essential to well being and quality of life
(QOL) [5,6]. Everyday activities, or occupations, can
be broken down into constituent components of
self-care, work and leisure within a physical and
temporal environment. Importantly, occupational
therapy theoretical frameworks emphasize the
importance of everyday roles and routines in the
maintenance of wellbeing [3]. Occupations are indi-
vidually experienced and mediate ways in which a
person connects with their physical, spiritual and
sociocultural world [4]. The complexity of occu-
pation is also reflected in the concepts of ‘total pain’
[7] and ‘total dyspnoea’ [8], which capture the
impact of such symptoms on every aspect of being.
Abernethy and Wheeler [8] note ‘total pain’ and
‘total dyspnoea’ provide an organizing framework
for managing breathlessness. The theory of occu-
pation provides an empirically tested theoretical
framework against which to holistically evaluate
and examine the interventions related not just to
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Occupational therapy interventions Morgan and White
breathlessness, but to other complex symptoms as
well [3,4].
Existential losses experienced alongside func-
tional decline are explored in palliative care
research. It is clear that inability to engage in valued
and essential everyday activities or occupations
compromises QOL and contributes to suffering
[4,6,9–12]. Losses associated with restricted parti-
cipation are only amplified at the end of life as
meaning attached to ongoing participation is inten-
&
sified during this time. [13,14 ,15–17]. Rather than
limit focus to declining participation, a developing
body of occupational therapy research reveals that
people with advanced disease continue to strive for
ongoing participation in everyday life to the best of
their ability. The presence of debilitating symptoms
such as breathlessness does not extinguish the drive
&
to participate in everyday life [2,13,14 ,18,19].
The unique role of occupational therapy in the
management of breathlessness is its dual focus on
both disease processes and impact on everyday
participation, described by Mattingly [20] as a
two-body practice. Two-body practice relates to
the objective assessment of symptom burden, but
also exploration of the impact of these changes on
valued roles and routines as they occur within the
person’s environment. Further, occupational thera-
pists are trained to elicit the meaning attached to
various activities, volitional influences on these and
how these may change in the face of illness [5]. We
need to ask what meaning a person attaches to
breathlessness when it prevents them from shower-
ing or simply walking to the toilet. What is it
important for them to continue to do and why?
Bodies become unreliable and difficult to inter-
pret during illness; however, occupational therapy
research in palliative care demonstrates that it is
through active participation in everyday activities
that people redevelop or better maintain a sense of
self and control over a rapidly deteriorating body
[2,20–22], even when there may be no resolution for
symptoms such as breathlessness. Although con-
fronting, opportunity to participate in meaningful
and valued activities helps sustain motivation,
develop realistic expectations and promotes the
experience of wellness. Participation has been found
to act as a countervailing force to existential suffer-
ing, mediating adjustment to functional decline in a
range of modalities [2,13,16,23]. In other words,
engagement in meaningful activity or occupations
has therapeutic utility and must be considered
in conjunction with symptom management [23].
Further, interventions targeted at optimizing func-
tion at the end of life can result in improved con-
fidence and participation, ameliorating suffering
and enhancing QOL [24–29]. Facilitating this
www.supportiveandpalliativecare.com 139
 Respiratory problems
participation – living until you die – is the domain
of occupational therapy.
THE DEVELOPING ROLE OF
OCCUPATIONAL THERAPY IN THE
MANAGEMENT OF BREATHLESSNESS
A range of nonpharmacological interventions for
the management of breathlessness in advanced dis-
ease have been examined in recent literature [30–
33]. Interventions such as energy conservation and
relaxation, which constitute core occupational
therapy clinical practice, are incorporated routinely
in both pulmonary rehabilitation programs and
with other diagnostic groups such as people with
cancer or motor neuron disease (MND).
Energy conservation, pacing and relaxation
Just when I walked I paced myself better because I
was always one of those that walked quickly, I’ve
always walked quickly in my life, and I had to
slow that down and walk slowly [2].
Energy conservation is employed routinely as an
occupational therapy intervention with many
chronic diseases and identified in literature as an
intervention for managing breathlessness [30,34–
36]. As specialists in evaluating the impact of disease
on everyday function, occupational therapists play a
key role in the application of activity pacing and
energy conservation in the management of breath-
lessness at the end of life. Although occupational
therapy literature examining the efficacy of energy
conservation focusses on its role in fatigue manage-
ment [24–26], findings from nursing and physiother-
apy cancer research do lend support to this practice
[37–39]. Energy conservation techniques enable
people to participate in both essential activities
and, more importantly, to those activities to which
people ascribe value and meaning [37]. In one study,
interventions of breathing re-training and education
on relaxation techniques and coping strategies sig-
nificantly reduced difficulty in performing activities
of daily living up to 3 months after the study [38].
The role of relaxation in managing breathless-
ness is addressed in the chronic obstructive pulmon-
ary disease (COPD) and palliative care literature
[36,38,40]. An occupational therapy randomized
controlled trial (RCT) to examine the effects of
guided imagery on breathlessness in people with
COPD found a significant increase in partial oxygen
saturation [36]. It was hypothesized that this was
because of guided imagery assisting in establishing
more effective breathing patterns.
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Translation of effective symptom
management into everyday participation
By the time I dry myself and powder and what-
ever, I have all the clothes ready. Prepare it all
before yeah. And then I’ve got to sit and rest for a
while ‘cause I’m puffed out [2].
Nonpharmacological management of breath-
lessness has been extensively researched in the
COPD population as evidenced in the pulmonary
rehabilitation and physiotherapy literature. This is
supported by an emerging body of research which
highlights the role of occupational therapy in pul-
monary rehabilitation and management of breath-
lessness [21,34,41–46]. What sets occupational
therapy apart is its focus on translating the benefits
of effective symptom management into practical
everyday experiences, enabling valued participa-
tion. In a prospective clinical trial, Lorenzi et al.
(2004) evaluated the effectiveness of occupational
therapy interventions administered as part of an
inpatient pulmonary rehabilitation program for
people with COPD. Areas of declining independence
were targeted for intervention, and results demon-
strated a significant improvement in functional
status. Given this was not a randomized trial and
a complex intervention was evaluated, the influence
of confounding variables cannot be excluded.
However, results lend support to the efficacy of
occupational therapy interventions in improving
independence in activities of daily living or occu-
pations for those experiencing breathlessness.
The majority of research undertaken by occu-
pational therapists around interventions for manag-
ing breathlessness is found in the COPD literature,
in particular by Migliore Norweg [41,43,44,47,48].
The emphasis of this research is on the use of non-
pharmacological interventions to manage breath-
lessness but notably, evaluated within the context
of everyday activities or occupations. A case study
report examining the outcomes of an occupational
therapy intervention aimed at managing dyspnoea
within a domiciliary environment reported a
reduction in breathlessness on activity exertion,
and improved QOL and functional ability [43].
Migliore Norweg’s [48] guidelines for the man-
agement of breathlessness focus on three key areas
for intervention. These are controlled breathing at
rest, with activity exertion and management of
anxiety related to breathlessness. These interven-
tions address all aspects of everyday function from
active exertion through to recovery and rest, and
associated emotional responses. Specific techniques
employed by Migliore Norweg et al. [44] that are in
addition to more commonly used techniques to
Volume 6  Number 2  June 2012

manage breathlessness include biofeedback of both
visual (via pulse oximetry) and auditory (paced
breathing sounds) nature to help establish more
effective breathing patterns. Outcomes of interven-
tions are measured by obtaining patient feedback on
perceived breathlessness and perceived level of exer-
tion. In addition, oxygen saturation, heart rate,
blood pressure and respiratory rate are measured
before, during and while recovering from activities
of daily living identified as important by the person.
These techniques emphasize the importance of
doing to facilitate learning as opposed to receiving
simple verbal instruction.
The importance of assessments and interven-
tions for breathlessness within the context of every-
day activities is further supported by a RCT
conducted by Migliore Norweg et al. [41]. Results
indicate that the effectiveness of breathing retrain-
ing (pursed lip breathing, compensatory postures
and exercise training) is enhanced when combined
with supervised activity training. This training
employed adult-learning strategies to enhance the
uptake of breathing retraining in a safe environment
during activities that were relevant to everyday life.
Migliore Norweg et al. [41] propose that combined
breathing techniques and activity training work
directly to optimize function. A consequence of this
is a reduction in dyspnoea-related anxiety. Of
particular relevance to those at the end of life
who experience inexorable functional decline, the
frail, but motivated elderly benefited more than the
younger, more physically able participants in this
RCT.
FUTURE DIRECTIONS FOR RESEARCH
I’d like to get an insight into how some other
people cope... Well there must be other people
that feel the same things as I do about, you
know, is it worth trying to do this or that? Do
they panic like I panic when I think I can’t
breathe? [2]
Occupational therapy literature clearly ident-
ifies the vital nature of ongoing participation in
everyday activities. Importantly, it demonstrates
that the need for ongoing participation does not
diminish at this time; rather, it intensifies at the end
of life. Indeed doing, albeit in a limited capacity, is
experienced as synonymous with living, well being
&
and enhanced QOL [2,4,6,13,14 ,15–18,49]. Exist-
ing research on occupational therapy interventions
to manage breathlessness highlights the importance
of implementing strategies within the context
of functional activity [41,43,48]. This developing
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Occupational therapy interventions Morgan and White
occupational therapy evidence base that explores
interventions to manage breathlessness and pallia-
tive care informs a future research agenda. Three key
areas warrant more rigorous examination.
The efficacy of relaxation and energy
conservation interventions to manage
breathlessness
The majority of research examining the nonphar-
macological interventions for breathlessness at the
end of life is found only in the COPD literature
[30,50]. Two recent Cochrane reviews by Bausewein
et al. (2008, 2011) note there is insufficient evi-
dence to evaluate the efficacy of interventions
such as relaxation in the management of breath-
lessness. Evidence to support energy conservation
as a technique to manage breathlessness is limited
and low level [37–39]. More rigorous research is
required to determine the efficacy of energy con-
servation and relaxation in the management of
breathlessness.
Identification of specific components of
interventions that will assist management of
breathlessness and optimize function
Migliore Noweg et al.’s RCT [41] focuses explicitly
on the management of dyspnoea during exertion,
not management of the rest and recovery phase of
activity as outlined in her dyspnoea management
guidelines [48]. Further research involving larger
studies is required to examine the efficacy of tech-
niques to manage breathlessness through all phases
of everyday activity. Although it would seem logical
that the techniques employed by Migliore Noweg to
manage breathlessness in COPD would be transfer-
able to other conditions such as advanced cancer,
chronic heart disease, interstitial lung disease, or
MND, this has yet to be examined.
One of the unique features of Migliore Norweg
et al.’s [41] study is its use of interventions targeted
at optimizing everyday function, as opposed to
evaluating impact on exercise performance. The
benefits of ‘doing’ and practice of new skills are
emphasized over didactic instruction alone. Other
occupational therapy research supports the efficacy
of targeted occupational therapy skills-based inter-
ventions (single and multi component) in optimiz-
ing everyday function [51–54]. However, further
study is required to determine which specific com-
ponents of Migliore Norweg’s interventions will
achieve the maximum benefits in the management
of breathlessness during functional activities.
Although Migliore Norweg et al. [41] dyspnoea
management strategies were applied to everyday
www.supportiveandpalliativecare.com 141
 Respiratory problems
activities that patients identified as triggering
dyspnoea, interventions were not conducted in
participants’ homes. Effective translation of strat-
egies into everyday environments is crucial for both
patient and carers, particularly as people spend
increasingly extended periods of time at home with
ever decreasing function. One study comparing
the outcomes of home-based versus centre-based
pulmonary rehabilitation found more sustained
improvement in the home-based group. They pro-
pose strategy implementation in the home setting
contributed to a greater sense of control over breath-
lessness [55]. However, the evidence base to support
increased uptake of breathlessness strategies within
a domiciliary setting is limited. Evaluation of
Migliore Norweg’s breathlessness interventions to
determine whether they enable participation within
the home environment is an area that warrants
further research.
Identification of patient-identified everyday
activities that are important to continue
doing irrespective of advanced disease and
symptom burden
People at the end of life have an ongoing drive to
participate in every day activities to the best of their
ability, irrespective of breathlessness and other
symptoms [2]. Occupational therapy and physio-
therapy research evaluating rehabilitation aimed
at optimizing function for people at the end of life
emphasize the importance of incorporating patient
goals into treatment plans [24,25,56]. Further
research is required that elicits patient-directed
rehabilitation goals as they relate to the impact of
breathlessness on participation.
CONCLUSION
What sets occupational therapy apart is its focus on
practical application of interventions to enable
optimal participation in essential and valued every-
day activities. Occupational therapy also provides
an empirically developed, theoretical framework
consistent with concepts of total dyspnoea, against
which to evaluate future research outcomes. Emerg-
ing evidence lends support to the benefits of
occupational therapy interventions to manage
breathlessness and informs a future research agenda.
Acknowledgements
None.
Conflicts of interest
The authors declare no competing interests.
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